When did this become okay?

chronic Pictures, Images and Photos

When I woke up this morning, I felt unusually well. Most mornings I am greeted by a massive wall of pain upon awakening. The kind that you react to, with a moment or two of panic, until you remember that you are "okay". Most mornings remind me of what it might feel like to wake up in a hospital after having been in a major accident and losing consciousness. However, in this case, all of your bones are intact, even though your spine feels like it has been crushed. The pain radiates into my hips and down my legs. My knees feel like they have been shattered by a blow from a baseball bat. As I get my barings, I remember that this is just another typical morning in the world of chronic pain.

This morning was different. It was almost surreal. It is actually disorienting when pain isn’t the first thing that barges into my mind the moment I wake up. These rare experiences are most welcome, but surreal non the less as they have become so unfamiliar.

When did waking up in agony become the norm? When did I start reassuring myself upon waking that I’m "okay"? There is really nothing okay about feeling this way, yet I can reassure myself that I’m not in danger. Does that make sense?

So today the pain stayed fairly quiet until early this afternoon, when it started reminding me that it had not gone very far. Fatigue had taken the place of pain this morning. These are the days that I realize how much energy hurting takes from me each day. It’s like when I finally get a break from the pain, my system crashes and knows that it needs some recovery time before it starts all over again.

On the rare occasion that the pain is low, I want to be able to do something productive, but the fatigue is so heavy that all I can do is doze in and out of a state somewhere between barely awake and barely asleep.

In other words, most of the day was a write off, however I was grateful for the few hours I had of low pain levels this morning 😉

The answers I really want, are ones that nobody can accurately provide. I understand all the bioneurological mumbo jumbo, but I really don’t get how all of this became my reality? I would have never predicted that my days would revolve around pain, fatigue, medication, nausea, muscle weakness, remembering to eat and to keep hydrated, among countless other health related tasks that consume the hours of my days.

Next time someone asks me the dreaded question "what do you do?" (Referring to employment), I think my answer should be "I manage chronic illnesses". 😉

~ Gentle Hugs

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17 Responses to When did this become okay?

  1. Anonymous says:

    That is going to be my new answer to what I do too 🙂
    Annie

  2. I respond with “I’m a housewife”. It seems more ‘respectable’, somehow, than saying “I’m on disability”. Although, if I’m pressed, I’ll say that too. I try not to get the “Wow, staying home all day must be nice!” comments get to me too much. I know people aren’t saying that to be snarky (almost never, anyway) but because they’re “jealous”. That’s when I have to explain that, given the choice between being on permanent disability and working full time, I’d rather be working.

    • Nancy says:

      I usually respond with “I’m a stay-at-home mom”, which I am… Last week, when I went to get my haircut, there was a new girl (she was probably in her late teens) standing by, watching the stylist cut my hair, and she started a conversation with me. She asked me if I work, and I replied with the standard Mom answer. She then asked me if I planned to return to work one day. Then I felt a bit awkward, as I do when strangers ask me about my life…lol. I explained that I had to stop working a couple of years ago, because of my health. Perhaps I mumbled, as she asked me to repeat…LOL. My stylist repeated it clearly for her, and I could tell even she was hoping the girl would drop it 😉 The woman who cuts my hair has gotten to know me and knows a bit about my “challenges”. This young girl wasn’t doing anything wrong, she was just trying to engage in a conversation and be friendly…it was just a bit awkward on my end :S

      • I think one of the things that led to the grocery store letting me go is that I freaked them out a little bit. When I got back from the two brain surgeries, I had bright red scars on both sides of my neck. If a customer asked me “Did you have thyroid surgery?” I’d answer honestly and say “No, I had brain surgery.” *I* never minded talking about it, but I think my bosses felt a bit awkward when/if they overheard me.

        • Nancy says:

          I think that’s horrible that they were not more supportive 😦 Wouldn’t that be considered wrongful dismissal?

          • You’d think so, but they covered themselves by giving me bullshit writeups. Then they could say “See? Corporate policy is that you’re let go after four writeups, and she’s had dozens! If we weren’t concerned about her, we would have let her go a lot sooner!” And, at my termination meeting, the corporate head of human resources for the grocery chain looked me in the eye and told me flat out that she “didn’t think there was anything that said we have to give you those accomodations!” Meaning a chair to sit on, certain hours during which to schedule me, etc.

            • Nancy says:

              I am appalled that employers manage to get away with treating people this way! I was very fortunate to have an employer who was willing to make any adjustments necessary so that I could continue to work there as long as possible. When I told them that I could no longer even do the one shift a week at this point, they were even willing to transfer me to another department, in hopes that having a desk job would be doable. Unfortunately by this point though, I was barely able to make it from bed to the bathroom and back on my own. I can’t sit, stand or walk for any length of time, so that leaves me a bit limited on options. I’m still fighting the battle for disability.

    • davidinpain says:

      I say I am off on disability alot and get the dreaded “wow, that must be awesome” Ya, it would be awesome…if I was healthy…
      I would love to be able to work the choice between chronic illness and boredom or work is not really even a choice in my opinion

      • Nancy says:

        I completely agree David. I enjoyed working and being able to contribute both, within society, and to our family income 😉 Those people who think it’s “awesome” that we are at home, have absolutely no concept of what we deal with on a daily basis, and how we all wish we could give this up and be healthy enough to work!
        Thanks for your comment David!

        • davidinpain says:

          Sadly what we deal with is not something you can put on a resume as work experience. As far as the world is concerned I am as qualified as a 16year old. Assuming I ever get healthy finding a good job will be very hard. Health problems not only effect us now it will for rest of our life, I feel like I been held back a grade 12years in a row now and counting.

          • Nancy says:

            For all that we experience and learn through this journey, we should qualify for a degree in something 😉 but unfortunately we don’t. Even for myself, who finished high school and did a couple of years of college, I’m out of the “loop” David. The more time that goes by without being able to work, the more outdated the knowledge we do have gets… I think that’s why it’s important to try and stay in the loop as much as possible, by keeping ourselves educated on what computer programs are being used, etc. If you have the opportunity, there are courses you can take online to obtain your GED. Even if it’s not to put on a resume, completing courses, classes, workshops…or whatever fuels a feeling of accomplishment. I agree…chronic illness has an impact on our entire life, and not just in the present.

      • I worked retail for about a decade. While I had my share of rude/stupid customers, and while several of my bosses left alot to be desired themselves, I still kinda miss it. I can’t drive, and we now live in an area with no bus service, so I’m effectively housebound. Working retail at least gave me the chance to meet and greet new people, if only briefly.

  3. Anonymous says:

    Relating
    I really relate to your post, and I love that last tid-bit about telling others you manage chronic pain for a living.
    When did this become okay? Today I experienced more pain that usual upon awakening. It makes me really sad when I don’t feel like doing much of anything, which is not that unusual (because of the fatigue). It is a hard road living with chronic pain, even if it is “under control”, so much of our energy is zapped keeping it there. I feel a bit hopeless today…but I know that I will pick my hope back up tomorrow. I have to.
    Glad to be on this journey with you. It is so comforting to know I am not alone.

    • Nancy says:

      Re: Relating
      Awww…I was touched by your comment. I’m sorry you are feeling so down today, but glad that you have the strength from within and the courage to know that tomorrow is a new day, and that you need to keep moving forward…one step at a time. I wish that none of us were in this situation, but since we are, we may as well do it together, than face it alone 😉
      I hope that you are able to get some rest tonight, and that tomorrow is a brighter day with less pain and more energy!
      (((gentle hugs)))

  4. Anonymous says:

    Any break is welcomed, isn’t it? It is an odd world we live in! LOL

    • Nancy says:

      Absolutely! I’ve learnt to always expect the unexpected 😉
      Nice to hear from you Dominique.
      Hope you are doing well today!
      (((gentle hugs)))

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